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On October 12, while presiding as the honorary chair for an Autism Speaks walk on the campus of Ohio State University, President Gordon Gee made remarks including the statement that “‘It [autism] should not exist.’” Melanie Yergeau, a 2nd-year Ph.D. student in English, wrote this letter, which is posted on the Autistic Self-Advocacy Network blog. As Yergeau, who notes that she has Asperger’s Syndrome, writes:
Until very recently, I have felt incredibly welcome at Ohio State—due to the interdisciplinary work of the Disability Studies Program and the Department of English, the Office of Disability Services, and the programs for high-functioning/Asperger’s adults at the Nisonger Center. I would urge you, as you continue in your autism advocacy, to consider what cure means to autistic individuals themselves, to familiarize yourself with organizations that actually appoint autistic individuals to their executive boards (e.g., the Autistic Self-Advocacy Network, or the Global and Regional Asperger Syndrome Partnership). In this regard, I find it important to note that none of the leadership or board positions of Autism Speaks are occupied by autistics: Autism Speaks speaks about autistics rather than for or with autistics.
As I read articles and listen to reports of the rally from my saddened autistic friends, I’ve noticed a trend in representation at Autism Speaks rallies like the one on October 12, 2008: autistics themselves have no voice. Any conversation that determines the fate of autism, I would argue, must consider the opinions, voices (however literally or metaphorically), and experiences of those on the autism spectrum. Although Autism Speaks admirably aims to help families attain necessary medical services, their cure-and-epidemic rhetoric frequently denies autistic individuals a most fundamental right—that of their personhood.
1230 days ago
[...] to calls for the inclusion of autistic individuals on the boards of autism organizations. (This letter states [...]
1248 days ago
[...] Letter to OSU President Gordon Gee A letter by Melanie Yergeau, a 2nd-year Ph.D. student in English, in response to remarks by President Gee including the statement that “‘It [autism] should not exist.’” [...]
Phil Schwarz, if you approve of getting rid of impairments through interventions, then you aren’t a threat. That is all that is really wanted. “Looking nonautistic” and those things aren’t my goals and I doubt those are sought by many others.
>> Hahaha! Why must I accept that your definition of autism isn’t arbitrary? Because you (think you) have it?
That’s crazy talk. :)
You are really keeping yourself in self-imposed darkness. It isn’t MY definition, have you read the DSM-IV? It’s effectively the English language definition. By going off and creating your own, very myopic definition you are undermining your own use of language and in a real way very much cutting yourself off from the rest of the world.
A world that could help you help your son. :( Neurodiversity.
Your posts are brim filled with misconceptions. Not the least of which I suspect is who I am, definitely what my experiences are (with my son and beyond including kids more severe than yours), and certainly what my views are. So I’m going to keep it short, because this isn’t the easiest or most appropriate place to get into all that.
Instead I’m going to focus on the positive here. You started out with a great explanation of “Why?” So lets at the root goals. I see in there, and some are a bit buried:
- basic communication
- communication of his state of being, needs, and wants, this is HUGE (and you are SO mistaken about who thinks this is wrong), it is also a sprawling category with lots of steps inside it
- written language
- communication with speech
- sophisticated, detailed grammar in text mode
- sophisticated communication with speech and body language
Those are in mostly logical order of pursuit, though depending on your son some of them run concurrently. It’s really a range of things as picture/graphic/sign language based communication can be taking really far. There is a lot of happiness to be had, for you and your son, in just steps one and two. Although there might be another goal hidden in there.
- awareness of physical state so as take care of self or ask for help
Your son may or may not have been consciously aware of his sore throat, it’s really hard to tell pre-communication. If it was a scratchy throat and he wasn’t doing anything about it he might not have even been directly aware of it.
This is why “I want him to talk” by itself is so empty of meaning. It was an extremely poor description of what your desires are. Again your language use is cutting you off, cutting you off from the people that can help you and your son. That want to help you and your son. That are trying to help you and your son in a practical, sensible way.
You’ve got a long, hard path to go. Disheartening in the extreme, this isn’t the parenthood you signed up for. But your railing against “neurodiversity” is based on a very basic misunderstanding of intentions, motives, and understanding.
P.S. A question, how old is your son and has he been introduced to PECS. Anything there at all yet?
*sigh*
Being able to write doesn’t necessarily mean that an individual can do ANYTHING ELSE that goes with “standard issue living”.
Additionally, in MY case, if we’re being specific, yeah, I can talk. That means that instead of noticing I don’t talk (which takes a while), people notice within a sentence that I talk FUNNY. Kids love me, adults find me seriously disconcerting.
Being able to physically write my name on a contract doesn’t confer the skills to understand or keep up with one. Being able to blog doesn’t confer ability to do housework. Being able to blog doesn’t confer ability to get everything that needs to be done, done at once…even if technically one CAN do all the skills a bit at a time.
Redefining autism and cure for y’alls own ends isn’t helping ANYONE.
Lurker and pD, how many times do I have to repeat this for you, until you acknowledge it and stop constructing strawmen to the contrary (way faster than I can point them out, much less “kill” them):
Serious pro-neurodiversity advocates do support more severely handicapped autistic people (so-called “low-functioning” autistic people) acquiring language, literacy, and maximal self-sufficiency. By whatever combination of educational, medical, and allied-health (OT, PT, etc.) interventions really do work for the individual.
That means, among other things, yes — pD’s son communicating. Whether by speech, keyboarding, sign, picture-and-letterboard, whatever.
Actively support. Through organizations like AutCom and TASH (whose clinical and professional members really are in the business of providing basic literacy education and access to, and training in the use of, alternative and augmentative means of communication), and for that matter, through other organizations funding serious research and clinical trials for medical interventions that can help. Work that gets peer-reviewed, and that has mitigation of specific medical ailments as its goal. Not vague handwaving about reduction of “autistic symptoms” or “autistic behaviors”. That’s what we mean by high standards of science and ethics.
We’re not against mitigation of handicap. Just against nostrums and regimens that make false claims. And just against misbegotten priorities, such as placing “looking nonautistic” above “gaining skills and developing strengths”.
What you call “cure” is, if it’s measures that really do help, what we would call mitigation of handicap.
It’s just wrong to call that “curing autism”. The end result is a person who is still autistic — just healthier and more capable.
We seek that for all autistic people, regardless of what handicaps they may be facing at present.
If you’re incontrovertibly committed to seeing us as the “enemy”, maybe I can leave you with a paranoia-inducing thought: what we who (you say) write so articulately on the Internet seek, is for more and more outcomes just like us. We apparently think that that is more of a possibility for your children than some of you do. It’s a matter of not letting what-is-currently obscure your view of what-can-be.
Think this through: if your greatest expectations for what you are calling “cure” come true, your children will not end up like you, they will end up like us.
In other words: Resistance is futile. You[r children] will be assimilated :-).
(Actually, my favorite parody of the Borg has to do with a poster-child for educational/behavioral intervention with the wrong set of goals:
“I am Lovaas of Borg. Your parents have paid me great sums of money. Resistance is futile. You will be assimilated.”
In that case, meaning assimilated into the nonautistic population. Which, from your definition of “cure”, you seem to agree with me is neither likely, nor of paramount importance to you. And that says to me that if you can be rational about it, and abandon the strawmen perennially constructed about us, you don’t need to regard us as the “enemy”.)
===
A further parting thought a propos self-sufficiency: no people, not even nonautistic people, are 100% self-sufficient: do you do your own car repairs, plumbing, HVAC maintenance, raising and processing of food, waste processing, diagnosis of computer hardware, software, and network malfunctions, etc.? Why are the things that the so-called “able” majority turn to specialists for OK to be dependent about, but things like assistance with household management, financial management, transportation, aspects of personal care requiring agility, strength, coordination, etc., considered not OK to turn to specialists for, and not funded and budgeted for on an equal par with the former set?
Hi Kassiane –
Language doesn’t necessarily confer any skill except more ways to make it easily apparent that I’m diagonally parked in a parallel universe.
The ability to use language does confer more skill; you just can’t see it!
You understand what a period means. You understand that capitalizing letters conveys additional meaning. You understand grammar. You understand that the phrase ‘diagnonally parked in a parallel universe’ has meaning to convey a message; this means you understand an extrodinary range of abstract concepts. You understand that typing autismvox onto a screen will take you someplace where people are discussing autism. You understand that words are comprised of letters, that words are meaningful tools for getting information out and in. You understand the rules of spelling, which means you’ve understood some very cumbersome, and indeed, often illogical conventions. But this isnt’ about literacy; because people that don’t know how to read are aware of that, and are aware that it is an impediment. But what if, instead, you were oblivious to the entire notion of reading?
If I know who you are, I believe you have a blog of your own, which I ran into once or twice. You were looking for a job, or having problems with boys or paying bills, if I remember correctly. All normal stuff; but again, indicative of an entire suite of complementary basic living skills that many people with autism simply do not have. The ability to understand numbers, to be sign your name on a lease or utility billing agreement, or that the sound on the other end of the telephone is a person.
These skills are very useful, in ways that that are only apparent if you try to imagine surviving without any of them; and even then, with just imagination, it is difficult to understand the true depth and breadth of the problems of people who have none of the skills I mentioned above.
I’m sure you’ve got problems, but again, it is about the heirarchy of needs; and there is a big difference between having something to write on your blog versus not understanding that letters can be used to comprise words. Big difference.
- pD
Sorry about the typos.
What Phil Schwarz said.
Whose opinion do I give a damn about?
My daughter’s, since she is the one most immediately concerned.
As far as Autism Speaks goes, what is their mission statement?
As far as self-advocates serving on boards, I might present the I might suggest the National Down Syndrome Congress and other DD groups, in addition to those already mentioned as models for inclusion of first-hand advocates, even those who have challenges.
Tyler, I cannot trust people like you because of how misleading that those like you are. I’ve seen that squares nonsense from those 2 links you showed. I know that Temple Grandin has the decency to admit that some forms of treatment are necessary and that low functioning autism exists. I know that she’s been chastised by neurodiversity for that.
“You have to keep in mind those who are “high functioning”, even if you don’t count those will [potentially] become so through concerted help and intervention, does outnumber those that are not” Why are you telling this lie?
I know Autism Speaks is worthless and why they won’t really look for a cure. I bet within a year or two they’ll have some anti-cure high-functioning autistic on their board or something. I don’t see why it wouldn’t happen since someone anti-cure wouldn’t be going against the organization’s do nothing approach.
If your view on guaranteeing independence is how you stated it, then I can only consider you a defeatist who is out to demoralize anyone trying to keep the low-functioning from being permanently dependent. You don’t want any independence to be granted outside of current conditions, in which minimal interventions can only help some on the spectrum to a limited extent.
You don’t want intensive medical techniques to be devised to bring the abilities to the low-functioning that the non-disabled high-functioning ones enjoy. You should not be credited for favoring independence if you only advocate ways of achieving independence that will leave some with it and many more without it.
Who are you to say what is unrealistic? Why should it be kept that way when it doesn’t have to? Who should believe you when you insult any possibility of a dramatic therapy?
Those of you who arbitrarily are deciding that autistic people who can argue with you on the internet are “cured”:
Why? Some of the autistic people arguing with you on the internet DON’T USE SPEECH.
And ALL the autistic people arguing with you on the internet are very much autistic-we stim, we don’t look people in the eye, all that jazz. We just have LANGUAGE.
Calling us “cured” when we aren’t is inaccurate and it is dangerous. Language doesn’t necessarily confer any skill except more ways to make it easily apparent that I’m diagonally parked in a parallel universe.
Hi Tyler –
Why? No really, this is important. Because if you unpack what underlies that you might find some other way to satisfy your true goal. If nothing underlies that, or you haven’t thought about why, it’s probably a really good idea to take the time to do that. Because by itself it is pretty empty. It is certainly something VERY different and separate from: ” I want my son to be able to argue with folks on the Internet with the eloquence you are able to display; “
It is absolutely not empty; you just think it is because you cannot conceive of not having the basic building blocks of communicating effectively; as evidenced once again by your ability to debate. Being able to have discussions on the internet requires a mandate a suite of skills, skills that almost everyone has innately, and because they are so low level, they often escape the notion of even being skills one must acquire. It is a difficult scenario to see unless you are immersed in it; and again, we are back to the heirarchy of needs that seem to escape so many people who find the idea of a cure objectionable.
By way of example, a few weeks ago my son was sick; listless and not eating or drinking much for several days. About four days after he was sick, I noticed that I got a mosterous sore throat; followed a few days later by the same fever and malaise. It was a very sad time for me, because I immediately realized that my son had carried around a sore throat for days; something which I could have easily medicated for him, had he had any ability to let me know, by any means that he had a sore throat.
But communication of any abstract message elludes him; he cannot nod yes or no in response to a question of ‘does your throat hurt?’, he cannot draw a picture of a person and point to it’s throat, he did not point to his own throat, he cannot say, ‘my throat hurts’. Instead, he went about his daily routine with a very nasty sore throat, suffering, for absolutely no reason other than he has autism. Is wanting him to be able to communicate this basic need empty? Should I really believe for a single second that he might not want to have the ability to communicate that kind of thing to me?
Of course, just getting him to nod yes or no to a question requires a whole underlying suite of skills; like understanding the concept of the word ‘hurt’? The concept of how a medicine will make him feel better in an hour is foreign to him, as is what an hour is, and how that is different than a minute. The concept that a drawing can represent objects, and those objects can convey meaning to other people also requires a set of skills. The people who lobby against a cure for autism have all of these skills completely intact. It is no wonder they don’t see a cure as worthwhile; the challenges they face are fundamentally different, and indeed, less critical from the most basic self presevation perspective. You only get time to worry about the bullshit if you aren’t worried about self sufficiency. I heard a joke once that resonates well, ‘No one in Rhawanda is lactose intollerant’.
See, that’s the deal. You are just using some arbitrary definition of what autism is that you’ve made up yourself. Or got from misinformation on. The type of misinformation, quite arguably an EXACT piece of the misinformation, that Autism Speaks spreads.
Hahaha! Why must I accept that your definition of autism isn’t arbitrary? Because you (think you) have it?
The insidious things is that assuming your child gets to the point where his able to use language, maybe even talk to a degree, Autism Speaks is working AGAINST his interests, making the world harder for him. Because now he’s “cured” there’s nothing more to do, right? No more autism, it’s all gone bye-bye! :(
No no no. But if he can use language, he will be much further on the way to self sufficiency. In any case, my desires for him far exceed simply the ability to use language, but that is very important. I am under no illusions that the use of language is a panacea and a free pass to no problems, but you seem to be under the illusion that a complete lack of communicative ability is not a hinderance, or at worst, is equivalent to the problems faced by people who can attend college and compose ‘thought provoking’ letters to large organizations they feel are doing them harm.
It is so ironic because you are unwittingly providing an excellent example of what is so very wrong with Autism Speaks message and methods and attitude. The confusion, misunderstanding, and ultimately damage it leaves in it’s wake.
Sign me up then.
- pD
Have to admit that thought had yet to occur to me—what happens to an organization like Autism Speaks is someone, hypothetically (and not possibly), finds a “cure for autism”—I guess there’s no reason for them to exist anymore….
passionlessDrone, first I prescribe for you a full dose of Squaretalk on Square 8, link above in my last post. The link at the bottom that is, ALL of them. :) ((If you haven’t already, that post might not have been showing when you posted because posts with web links in them are moderated )).
>> I want my son to talk;
Why? No really, this is important. Because if you unpack what underlies that you might find some other way to satisfy your true goal. If nothing underlies that, or you haven’t thought about why, it’s probably a really good idea to take the time to do that. Because by itself it is pretty empty. It is certainly something VERY different and separate from: ” I want my son to be able to argue with folks on the Internet with the eloquence you are able to display; ”
>> I’ve got news for you; for what I’m looking for, I consider you to be cured.
See, that’s the deal. You are just using some arbitrary definition of what autism is that you’ve made up yourself. Or got from misinformation on. The type of misinformation, quite arguably an EXACT piece of the misinformation, that Autism Speaks spreads.
The insidious things is that assuming your child gets to the point where his able to use language, maybe even talk to a degree, Autism Speaks is working AGAINST his interests, making the world harder for him. Because now he’s “cured” there’s nothing more to do, right? No more autism, it’s all gone bye-bye! :(
It is so ironic because you are unwittingly providing an excellent example of what is so very wrong with Autism Speaks message and methods and attitude. The confusion, misunderstanding, and ultimately damage it leaves in it’s wake.
P.S. In my earlier post I might have been confusing something from Temple with this letter from Donna Williams (( http://www.autismtoday.com/articles/11_Year_Old_Writes.htm )). It’s long but I urge you to read it in full.
Hi Phil Schawrz –
A “cure” you’re after isn’t going to be all or nothing. It’s not going to make your son 100% nonautistic. Autism is pervasive: the only way you could make an autistic person 100% non-autistic would be a brain transplant: like wiping a disk of all its accumulated persistent state and installing new software with no memory of the old. And then you’d have a different person, no longer your son.
It is no wonder we don’t agree; you don’t have the slightest clue as to what I’m looking for, but you’ve assigned a series of beliefs to me that fit your argument and then knocked them down. I want my son to talk; if I achieve this biomedically, have I really changed him? If I achieve it through traditional therapies, what is the difference?
You can be in denial about it, and say that when such-and-such set of impairments has been mitigated, he’s “cured”, but he’s still going to think and sense and feel autistically. That vaunted “cure” is going to make him end up like us, not like you. You can raise him to repress all that (not recommended — been there myself, done that), or you can raise him to work with it.
That is sooooo funny! In a sense you are correct, but not in the way you’d think. I want my son to be able to argue with folks on the Internet with the eloquence you are able to display; I could care less if he is dead wrong in his associated knowledge set and conclusions, just so long as he has the ability to communicate as effectively as you. You have had a relationship with a woman, you have raised a child. Almost certainly, you have employment. I’ve got news for you; for what I’m looking for, I consider you to be cured.. I don’t care about indistinguishable; I care about functional. It is a hierarchy of needs, and it never fails that those who have progressed to the point of self sufficiency are the same ones who cannot see that self sufficiency is the most important achievement, for without that, all other goals are out of reach.
It is a fool’s errand to put your faith and energy in the shoot-the-moon proposition of a “total cure”. Stay away from the quacks and the people who think they’re scientists because they can get published in “Medical Hypotheses”. Better you should be investing in the incremental steps of skill-building and education, engaging educators and programs that focus on skill-building and not on “indistinguishability”. That’s the road to success.
You are a serial killer of strawmen.
The identifiable, and addressable medical conditions associated with autism are growing every day; ignoring them or pretending all biomedical treatments are akin to vodoo tells more about your preconceived notions than the actual state of the science. There is absolutely no reason not to pursue skill building, education, and programs that focus on strenghts while concurrently attempting to treat the medical abnormalities found in autism.
- pD
BTW lurker,
>> If guaranteeing independence is one of their goals, they sure have a peculiar way of expressing that they have that goal.
If guaranteeing independence was one of their goals they’d be truly delusional and/or snake oil salesmen. A goal of any many as possible with as much independence as feasible? YES! Unrealistic expectations of complete independence for everyone? No.
lurker,
Perhaps you aren’t looking hard enough, in the right places, or are misunderstanding. Or maybe there is something in the way? Something like looks a bit like this: http://bp0.blogger.com/_1vPB2M2IMiI/SIHzAzFuC4I/AAAAAAAABes/fGYT0R5oIL0/s1600-h/squares+in+translation.png
I really should have bookmarked a great, and lengthy letter from Temple Grandin about this very subject. But I didn’t and now I’m having a hard time finding it. :( It basically talks about why these thoughts of “cure” have deep seated problems BUT that [some kinds of] research and treatments are is important, morally imperative really, to alleviate some serious debilitating conditions suffered by some on the spectrum. You have to keep in mind those who are “high functioning”, even if you don’t count those will [potentially] become so through concerted help and intervention, does outnumber those that are not.
The core problem with Autism Speaks is that, well, it ISN’T autism speaking at all. Along with the junk science written into their core mission statement, it shows a lack of empathy and understanding of what autism as a whole represents or even is. I very much agree that personnel is policy, and Autism Speaks policy is [I suspect purposely] creating and reenforcing a very distorted view of autism among the public. One that ultimately will be, if left unchecked, detrimental to my son’s future.
P.S. I recommend the whole series of Squaretalk ( http://aspergersquare8.blogspot.com/search/label/Square%20Talk ).
Phil Schwarz, if I have the same goals as those neurodiversity advocates, I wonder why I don’t see them pushing for those goals. I don’t see them urging anyone to do research into devising ways to eliminate handicaps, or complaining about the lack of research into that. If guaranteeing independence is one of their goals, they sure have a peculiar way of expressing that they have that goal.
Educational interventions would be helpful for now, but that won’t be enough to eliminate all of the communication and intellectual inabilities. I hope neurodiversity is on my side. I wish they would come out in favor of medical interventions that would take away the disability involved with autism. Whether one is still considered autistic according to you doesn’t matter to me. I only want the goal of intervention to be the removal of mental disability and the gaining of skills.
Not all pro-neurodiversity autistic self-advocates are so-called “high functioning” — the so-called “low functioning” self-advocates outnumber the so-called “high functioning” self-advocates within the community of the Autism National Committee (AutCom) — an organization which has historically focused on the human rights and access to communication and education of more severely handicapped autistic people.
Lurker, it’s really a shame that your misunderstanding of serious pro-neurodiversity perspectives leads you to such antipathy towards them. You really do have very much the same goals, as articulated in your post above, as do pro-neurodiversity self-advocates and their allies.
I think what you’re calling a “cure” is simply anything that mitigates a handicap or removes an obstacle. No quarrel there: that’s unequivocally a good thing.
But there’s a difference between interventions that work, and quackery and pseudo-science that thrive only on media-hyped desperation and placebo effect.
There’s a difference between educational interventions that help students develop skills and strengthen abilities, and interventions that are focused on making students look nonautistic.
Serious pro-neurodiversity advocates do not object to medical interventions that really do mitigate real medical problems, nor to educational interventions that really do focus on skill-building and developing abilities.
The point is that these things don’t make one less autistic. They make one a healthier and more capable autistic person.
Becoming “less autistic” just to be less different (rather than to become more capable of navigating and thriving in a nonautistic society) just isn’t on our agenda.
And all of this applies to autistic people in all regions of the spectrum, regardless of what their starting point is.
Damn straight that so-called “low-functioning” autistic people should be given the right support and educational approach to achieve literacy and expressive communication. Too many people labeled that way are written off as incapable as a foregone conclusion and denied such opportunities.
Damn straight that too many so-called “low-functioning” autistic people are in inadequate, inappropriate, or downright abusive living situations in which they have too little autonomy and too much vulnerability.
Those are concerns of serious pro-neurodiversity self-advocates and allies just as much as the concerns that conventional wisdom associates with “high-functioning” autistic people.
You’ve been sold a bill of goods about pro-neurodiversity by people who feel threatened by it, and have no logical reason to feel so.
You said “Maybe it would be just if there would be representation on the board that would actually represent the majority of autistics, by having representatives from all functioning levels of the spectrum, with a number of representatives from each functioning group proportional to the percentage of people it has on the spectrum.”
Guess what — I agree completely. What you’d find, though, is that the vast majority of those people from all those regions of the spectrum would be in agreement about a lot of issues. In agreement with us.
Phil Schwarz, then what does the “serious” pro-neurodiversity perspective stand for in regards to what I talked about?